Tuesday, November 5, 2013

Multiple updates

Team,

Sorry for the delay. We post many pictures on FB and due to timing it is hard to get everything here as well. Here is update from past couple of days.
Monday Update
Waking up every few hours, through out the night to administer medications and Delaney's earlier than the bird mentality is is taking a toll on Mommy and Daddy. Not to mention the constant care through out the day. Delaney receives 10 different medications over the course of 24 hours. Some are given every 6, 8, or 12 hours apart. Delaney's nausea seems to tapering down, a sigh of relief for us. However, we are always on our toes, watching her for any signs or changes. Today was a day for us to watch her temperature, this is a sign of infection, because she is neutropenic. Thankfully Delaney was able to stave off a fever today. Delaney's home health nurse, whom she has grown fond of, came by for a routine check up, discuss concerns, and for us to ask questions. By early morning Mommy and Daddy could tell that Delaney was tired and not feeling well, which goes hand in had with her blood counts dropping. Seeing how she was, we made the decision to opt out of physical therapy today. It is hard because we know it is important for her, but she needs her rest. She rested a lot today, but that is good, hopefully her blood counts swing back up in a couple of days. Mommy was in contact with UCSF today, getting questions answered about the harvesting that is to be done later this week on Delaney. Delaney had a few moments today where she wanted to try and crawl again, she is trying so hard, slowly but surely. Being neutropenic is a big problem, so much so that Delaney is not able to brush her teeth with a tooth brush, because the bristles in the tooth brush could cut her gums, and be way for an infection to start. So she has to brush her teeth with what looks like a tiny foam ball no bigger than the tip of your finger. All the things Mommy and Daddy must learn, and watch out for when Delaney is going through chemotherapy. Delaney is back at it tomorrow, at the infusion clinic, for more chemotherapy, this will be an out patient treatment, following an appointment with her oncologist. This is still part of her cycle 2 of chemotherapy. She just keeps pushing forward. Thank you for all the prayers, love, and support. Plus mommy and Daddy like hearing "GO TEAM DELANEY" shout outs while they are out and about it is good for their spirit, and we do tell Delaney also. As always.... GO TEAM DELANEY!!

Sunday Night Update

Setting our clocks back did not do much for our sleep. Delaney was up at 5 am and it seemed to be one if the longest days for us. Today was blood draw day, so Mommy and Daddy prepared the supplies necessary to access Delaney's Broviac and drew blood. Delaney has become very corporative in this process which makes it a little less stressful for Mommy and Daddy. The blood did not come out that easy today, sometimes it is positional, sometimes we need her to get up set to raise her pressure to push blood out. We tried to mover her arms, her head side to side, take a deep breath. None of which worked, so we had to agitate her, this made the blood come out. Then off to Walnut Creek to drop the blood off by 8 am. The oncologist has a STAT order on all of Delaney's blood draws, this means they are processed and results are seen with in less than 1 hour. It is important to see her blood counts, we will know if she needs a platelet transfusion, blood transfusion, and her white blood cell counts. Today the results showed that Delaney is severely neutropenic. Normal white blood cell counts are 5,000 - 15,000. Delaney's count is 100. Her risk for infection is extremely high. So today we had a movie day. Delaney rested as much as she could, and played with brother. Delaney's appetite was better than most days, this was nice to see. Delaney is trying to do more things on her own. She is trying to crawl, but Mommy and Daddy must still hold her up to go through the motions. As hard as it is to watch sometimes, we put that emotion aside and we are drawn to her motivation to try to crawl and smiling while trying, we are so proud of her. She has come so far and is so much more stronger. Delaney is asleep at a good time, ready to take on a busy week. Another injection to give Delaney, another day down. We love how fierce she is. Thanks for all the prayers, love and support. As always GO TEAM DELANEY!!